Evelyn’s Recovery from ADEM

$40,890 of $40,000 goal

Raised by 332 people in 8 months
Our sweet Evelyn had a rough October. She had a stomach bug the beginning of the month then mid-month she got a fever and wasn’t feeling well. The low grade fever and varying symptoms lasted 14 days. We visited 3 different pediatricians each diagnosing her differently - virus, acute sinusitis, pneumonia. She was on two antibiotics and not getting better.

On Day 14 she spent most of the day in bed. She was tired, not communicating and needed help moving around the house. We took her to the ER and within an hour, she had two focal seizures. The next day she went through a long day of tests and the final  diagnosis was Acute disseminated encephalomyelitis (ADEM), or acute demyelinating encephalomyelitis, a rare autoimmune disease marked by a sudden, widespread attack of inflammation in the brain and spinal cord. The Doctors believe it was from the stomach bug. The light “m” you can see in the image of her brain is the inflammation. 

Evelyn is being treated with steroids and IVIG treatment. While initial signs were positive, doctors have not been pleased with her overall progress. We will continue to monitor her and rescan her brain to ensure that there are no other risks.

She is expected to remain in the hospital for several weeks or months as needed to help her receive speech and physical therapy for a full recovery. She has lost all speech and much of her movement. Depending on her progress, she may require near or long term assistance once we are discharged. We are taking it one day at a time and blessed for each small victory.

Many people have asked us how they can help. Richard has just started a job and will not be returning to it. Emily’s job has been very supportive but it’s challenging to predict the route that Evelyn’s recovery will take us. We also have our two year old son to care for while both of us are active with  Evelyn’s recovery. 

It is very hard for us to ask for help, but here we are. If you would like to contribute to help fund a meal in the hospital, buy Evelyn some books/toys during her stay, help with the medical bills or contribute so that finances do not influence the type of care we can provide for her - we would be forever grateful.

We can’t wait for our strong, sweet, sassy, outgoing, loving girl to be swinging across the monkey bars and riding her bike again.

Many blessings to you and yours.

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Evelyn has been home for over a month and a half now and the progress she has made in such a short time is truly remarkable. She has not used her wheelchair once and within weeks was back to swinging on the monkey bars. She has no diet restrictions and her g-tube was even removed because it wasn’t being used.

This last month she has been receiving at home therapy, which just ended because she’s made such clinical improvement that she is being sent to a facility now for less frequent therapy.

While progress has been great, she still has a lot of involuntary movement and speech outbursts and phrase repetition as she works hard to gain full control back. Simple tasks like brushing her teeth or writing is challenging, and she’s working to maintain focus on activities longer than 15 mins.

Evelyn just finished her steroid treatment after almost 3 months. Her medical team is going to continue to explore other treatment options to assist with her movement disorders and get her closer to baseline.

She’s been receiving at home schooling from her 1st grade teacher (we are so blessed to have her offer her time) and will be transitioning back on campus in the next couple weeks. We can’t wait for her to play with her friends and not have to worry about anything but being a kid.

As a family, we are working hard to navigate our new experience with a daughter with special needs. We are blessed to have Richard available as her primary caregiver - which is a selfless and demanding job. We will do anything to give our daughter the opportunity to experience life with no limitations.

We’ll continue to update you on our journey here. Or you can follow along on our social accounts. Please keep praying! We appreciate it!
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She’s H O M E !!!
After 74 days in the hospital, 10+ medications, 5 MRIs, 1 surgery, countless hours of therapy and LOTS AND LOTS of love.... our angel girl is home sweet home to continue her recovery and living that good life.

This last week has been phenomenal and has us very hopeful that the best is yet to come from her. After passing her swallow test last week, she was slowly introduced back to food. We watched her eat a full meal on her own and the next day she woke up TALKING. She can now communicate her wants/needs/feelings freely and it’s improved her quality of life dramatically.

Every day continues to get better than the last and she’s now completely off of formula feeding and getting her nutrients through food. Her speech continues to improve daily as well.

Evie is expected to home school for maybe a month while we work with the Elementary school to create a plan for her. She will continue to receive outpatient physical, speech, feeding and occupational therapy. We were sent home with a wheel chair for long outings but she doesn’t need it daily.

We continue to count our blessings and thank all of you for the overwhelming love and support you’ve provided.

We are so thrilled to have our girl back!!
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We’ve now been in the hospital for 2 full months and are excited to share that we’ve received our “go home date!” In 2 short weeks (if all goes well) we get to bring our sweet Evie home to start the next chapter in her recovery.

It’s been a long journey to get to this point. Just a week ago there was no discussion of being discharged, as Evie was still not moving the right side of her body or making the progress we have hoped to see with speech and swallowing/chewing.

We elected to replace her “ng” feeding tube with a “g-tube” surgically placed in her stomach, in hopes that removing the tube from her nose/throat would allow her to relax and focus her energy on healing. There is also a crazy phenomenon around the g-tube and kids making major progress once they get it. The doctors like to say it “releases the demons.”

Well, less than 24 hours after getting the g-tube, Evelyn started to move her right side....!!!! It’s now been over a week since the operation and every day she’s had new ability that continues to amaze us. Watching her open presents on Christmas using both hands was a true miracle! She has also gotten to be very active in her bed and has graduated to a tent bed to help keep her safe!

While she’s able to move - she is still working on her strength, control, balance, coordination and endurance. There is also a lot of focus on helping her with speech and working to get her chewing and swallowing again.

We are so eager to get her home and are preparing for our new routine with g-tube feedings, administering meds and coordinating outpatient therapy.

Please continue to pray for Evie to be able to express herself vocally again and enjoy the taste of food.

Blessings to all!
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Great news to share! This last week Evie has made incredible progress with her walking. She can now take a lap around her hospital floor with minimal guidance! It’s crazy how much can change in a week. She’s also doing well walking up steps and bringing herself up to a sitting position. We took her outside to the playground this weekend and down the slide - she was ecstatic.

While she’s able to walk, she still has trouble moving her right leg on command. Something about the rhythm of walking is easier for the brain. She has also started making minor movement in her right hand. The left hand can come up to wave or point towards something, but holding it up for longer than a second is hard. She is also getting better at closing her left hand and has some ability to make a grip.

Evie continues to work on her speech, chewing, swallowing and trying to make any other intentional movements in her face. There haven’t been any notable changes so far.

We are getting more creative and finding ways to play games with her to help keep her spirits up! We’re finding that anything can be modified to engage her, by incorporating “yes or no” questions. This way she can pick her next move in a game, the color she wants to use to paint, etc.

We are so grateful for every milestone we reach but also know we still have a long road ahead of us. The doctors have adjusted her stay to about 5-7 more weeks in the hospital, and Emily will be returning to work in 3 weeks. We are keeping our fingers crossed for the Christmas Miracle that is coming!

Keep working hard, baby girl. You’ve got the world ahead of you.
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$40,890 of $40,000 goal

Raised by 332 people in 8 months
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